Tough Conversations
Throwback Thursday!
Today the school psychologist came to our house to do the final in-person evaluation. Our IEP meeting is set for the day after Memorial Day. We are so damn close.
The phsycologist recently observed Cooper at daycare and was shocked at how he acted like a different kid in different settings. I totally get this and could said it until I was blue in the face. I actually gave up trying to tell people becaue I started to sound like a broken record. At the school evaluations Cooper resembles Lucifer. And I’m not exaggerating. When she went to his daycare she saw relaxed, engaged, social and loving. Which is the kid I know. She gained a hundred points in my book when she asked to come to our home for the observation so she could see the real Cooper.
Today went well. Cooper acted exactly like Cooper. He was social but showed his delays in ALL areas. This lady was amazing though. After she left Jamie even said how wonderful she was. She commented on his sensory issues and his rigidity. But she also gushed about his strengths and his extreme cuteness. She got hugs upon arrival and when leaving and loved playing with our boy.
After she left Jamie and I were exhausted. As we prepared Cooper for daycare, so we could both go to work, we took 10 minutes to sit down and recap.
We both agreed it went well. We sat in silence for a while and then I asked him the question that’s been on both our minds for a long time. I asked him where Cooper was going to live when he grows up. And he said, ‘obviously with us.’ I choked back tears as I said I didn’t want that. “I don’t want him to live with us forever.’ We threw around words like social security and disability. How can we pay for his care forever? And what happens after we are gone. Where is he going to go? Who is going to care for him? Do we need to start putting money aside every month? Its’ just too much to think about right now.
This probably sounds dramatic since Cooper is only three. But trust me, it’s a real worry. I’ve spoke to a few other mamas with kids like Cooper and they’ve said the same sentence. ‘Is my child ever going to be able to live on their own?’ And there are no answers. At least not yet. We just need to take it day by day and eventually year by year. Only time will tell us what is going to happen. I hate it.
I’m glad she got to see more of Cooper, and hopeful what that might mean for the near future.
I wish I knew what to say for the longer term, but once more fall to . . . rooting for you.
Glad you had a good home visit! It’s good to see a child in all different environments. Re: growing up…my husband and I try to focus on getting our son to gain skills because the big picture aka the unknown is still changing 🙂
I have this worry too. Just today I thought to myself “I wonder if mason will ever be able to run to the store by himself and use a public restroom if he needs to.” Crazy right? What ever happened to dreaming of your son becoming a star athlete? I am dreaming if mine using the bathroom one day lol. Hugs.
My baby brother grew up, moved out, had his own place, and then developed a heart condition and had to move back in with mom and dad as he couldn’t live alone. And they absorbed the cost of feeding him special food, of picking up meds from the pharmacy and gas for the trips to the doctors offices.
The point is – we never know what is going to happen. Life can throw us a curve ball at anytime. Yes, it’s good to plan for the future, but after having gone through the experience with my baby brother (who passed away a year ago), I’ve gotten better about not letting the stress of the future just kill me and bring me down.
Cooper is young and capable of so much, you probably haven’t but scratched the surface. I know looking at him now you think of the troubles and challenges that will face him and this is completely natural. But with the way adaptive technology is going he may have the opportunity to be on a nearly equal if not equal playing field as some of his peers.
As far as places for Cooper, there are a number of “group homes” and I use that term very loosely. A while back I had a friend write a guest post on my blog (David C). He has a list of diagnosis including autism and fetal alcohol syndrome. While he struggles with a number of things, he does live on his own in an apartment by himself. He has a caseworker who lives near by and checks in on him regularly and helps with things David can’t do by himself.
Hang in there. The future is bright.
Big hugs. Sounds like she was a great evaluator! I wish our evaluations went that smoothly 🙂